Do I Need To Expect A Shorter Life Span?

[CrimsonRegret]

Doctors are like SURE I have this, they are just going to do a biopsy to confirm in 9 days. I show ALL the symptoms and everything. No one told me what any of this meant til I googled it but I am SO BAD at this point (I am severely underweight and all that) that I am going to just put myself on the diet now and see if there's anything that improves before getting the test. I wasn't told this I heard the name tossed around and I decided to look it up. All I know is this matches everything I've been describing about how my stomach is and how I've been feeling. 

 

I looked up average lifespan for someone with this and it says if it's diagnosed late or if there is too much damage, then I might not live that long. 

 

I am 28 years old, and I am rather worried that this wasn't caught in time. What if it wasn't? If I start a different diet today and am strict with it, do I need to worry about not living a full life?

 

RIght now I am 5'9 108 pounds because of complications. I didn't know this was even a thing, I still don't know if this is what I have, what I do know is I started to show signs as a kid and then I went through years where they thought nothing was wrong because I was able to gain a ton of weight. What I do know is that I've ALWAYS had these symptoms they just got insanely worse after I went off of some medication doctors said I didn't need. 

 

Anyway, can anyone tell me if I need to be worried about dying young here? Cause yeah 28 is young but it sounds like to be diagnosed with this it's WAY too late. 

[shadowicewolf]

You'll be fine People much older than you have been diagnosed before.

 

Also, stay on the gluten until the biopsy is done.

[frieze]

DO NOT STOP eating gluten until after the biopsy, OR don't bother with the biopsy.   9 days isn't a lot, and probably not enough to make a dif.  but do you want to chance it?  couple of slices of bread, or equivalent daily till biopsy.  Good luck.

Doctors are like SURE I have this, they are just going to do a biopsy to confirm in 9 days. I show ALL the symptoms and everything. No one told me what any of this meant til I googled it but I am SO BAD at this point (I am severely underweight and all that) that I am going to just put myself on the diet now and see if there's anything that improves before getting the test. I wasn't told this I heard the name tossed around and I decided to look it up. All I know is this matches everything I've been describing about how my stomach is and how I've been feeling. 

 

I looked up average lifespan for someone with this and it says if it's diagnosed late or if there is too much damage, then I might not live that long. 

 

I am 28 years old, and I am rather worried that this wasn't caught in time. What if it wasn't? If I start a different diet today and am strict with it, do I need to worry about not living a full life?

 

RIght now I am 5'9 108 pounds because of complications. I didn't know this was even a thing, I still don't know if this is what I have, what I do know is I started to show signs as a kid and then I went through years where they thought nothing was wrong because I was able to gain a ton of weight. What I do know is that I've ALWAYS had these symptoms they just got insanely worse after I went off of some medication doctors said I didn't need. 

 

Anyway, can anyone tell me if I need to be worried about dying young here? Cause yeah 28 is young but it sounds like to be diagnosed with this it's WAY too late. 

[kareng]

Everything I have seen, from reputable sources, seems to say that if you go gluten free, you return to a normal lifespan.

Open Original Shared Link

"celiac disease—which, left untreated, can shorten your lifespan and lead to other serious health issues"

[psawyer]

Celiac disease can develop at any point in your life. Your current age is not the relevant factor. Late diagnosis refers to the time after celiac disease becomes active. While the genetic factor is present at birth, a trigger is needed to activate the disease. There are cases of identical twins where one has celiac disease and the other does not.

 

I was 46 when diagnosed. I had had obvious symptoms for five years. I have been gluten-free for almost 13 years, and have completely healed my intestines. My life expectancy today is the same as a similar person without celiac disease.

[1desperateladysaved]

I had symptoms 30 years, had 5 babies and I haven't died yet. Infact, I am making improvements.   Still, I hope you are getting ready for the diet and your procedure will be done really soon.  I see it  could be urgent at your weight. 

 

By getting ready for the diet I mean that you can be reading labels in your kitchen.  Plan some new recipes.  Read on the forum for ideas of what to do.

 

Personally, I would begin on high quality and carefully selected gluten free suppliments.  Supplements saved my life before I went gluten free.  I had help from a chiropractor in my selections.  Make healthy diet selections, you truly need healthy food and no junk.  Find substitutes for gluten flours that you can start on in 9 days.

 

I am glad for you that you found out now rather than later.  You can begin to work on recovery.  Please keep us up to date.

 

Get well, Get well,  ***

Diana

[CrimsonRegret]

I just got a phone call (and it took her long enough as I called for the results last week of this test) that it says I do not have celiac....but there is a chance of a false negative right? 

 

See here's my problem. I am way too skinny....WAY too skinny. 

 

If my problem isn't Celiac because the doctor is saying the blood test says it's not (and she should have called me a week ago when she said I could call for results, which I did, then what could it be? 

 

Cause all I'm seeing is Crohn's disease now and if it's that, then I'm in trouble right? 

 

I was told by a nurse, that a false positive is actually rather common for the blood tests that's why they do a biopsy to confirm. You need to understand that if it IS this (and I did hear doctors tossing around the idea pertaining to me) then me eating gluten for the next 9 days is not an option. I am becoming violently ill with just about anything I eat. My stomach is so bad at this point I can't eat a cracker without getting insanely nauseous. I can't keep this up for 9 more days until the test. I also cannot get ahold of my GI doctor. Would it be best to just call and try to get a different doctor or talk to one on call? 

 

This guy is impossible to get ahold of I've tried every day for a week, I can't even get a receptionist. I keep getting a message that says the business hours and if I got that message to keep trying back cause that means they are busy, which I do, several times a day and nothing. 

 

I cannot keep living like this for 9 more days, I can't get ahold of my doctor, and then I get a call from a different doctor who said she ran this test that it's not Celiac. So I'm not exactly sure what to do at this point. 

 

Any advice? Because doctors suggest this, but because I'm seeing 3 different kinds of doctors right now I don't think all of them are getting all the information. 

 

Not exactly sure what to do here. I'm really really upset because if it's Crohn's I'm going to freak out. I already know someone who has that and in her early 20's she needed to get a bunch of her intestines removed. I don't need something like that. I'd much rather it be this but now it doesn't sound like it is. 

 

Any help? 

[kareng]

Blood tests are pretty accurate - assuming you had the right tests. Get a copy of the blood work and see if they even did any Celiac blood work. Sometimes, they order the wrong thing.

Open Original Shared Link

[CrimsonRegret]

Blood tests are pretty accurate - assuming you had the right tests. Get a copy of the blood work and see if they even did any Celiac blood work. Sometimes, they order the wrong thing.

Open Original Shared Link

 

When I talked to the nurse today I asked her if any tests were run for this, she said no. 

 

Then I got a call from a different doctor (GP) who said that she did run tests for this (though when I was at the appointment she didn't say she was running a test for this she just said something about an ANA and HIV test. That's all I was aware she was running. 

 

Keep in mind these are two different doctors at two different hospitals. 

 

When I talked to the first nurse she said in order to get THAT test run I'd have to do something specific, that they had not done that test. The other nurse INSISTS they did the tests and that I don't have celiac. 

 

As the OTHER nurse was kind of flippant and I don't at all trust that specific hospital at all, I just kind of HAVE to go there cause of my insurance, I guess I'll have to check for this test. 

 

I need to get into my chart on the Cleveland Clinic site as if this test was run would have been done in Endocrine not at this other place that I hate. And the nurse that said that the test was NOT run, was the endocrine nurse. I'm hoping that this first nurse is just being flippant like the doctor at that clinic because I honestly never plan to go back to that clinic with the way I was treated. 

 

Either way I will get into my chart and look for the results to see if they even ran the test or not. I don't trust that they did. 

[kareng]

When I talked to the nurse today I asked her if any tests were run for this, she said no. 

 

Then I got a call from a different doctor (GP) who said that she did run tests for this (though when I was at the appointment she didn't say she was running a test for this she just said something about an ANA and HIV test. That's all I was aware she was running. 

 

Keep in mind these are two different doctors at two different hospitals. 

 

When I talked to the first nurse she said in order to get THAT test run I'd have to do something specific, that they had not done that test. The other nurse INSISTS they did the tests and that I don't have celiac. 

 

As the OTHER nurse was kind of flippant and I don't at all trust that specific hospital at all, I just kind of HAVE to go there cause of my insurance, I guess I'll have to check for this test. 

 

I need to get into my chart on the Cleveland Clinic site as if this test was run would have been done in Endocrine not at this other place that I hate. And the nurse that said that the test was NOT run, was the endocrine nurse. I'm hoping that this first nurse is just being flippant like the doctor at that clinic because I honestly never plan to go back to that clinic with the way I was treated. 

 

Either way I will get into my chart and look for the results to see if they even ran the test or not. I don't trust that they did. 

Wow! I couldn't follow that! That's nuts! Even more reason to get your results.

[CrimsonRegret]

I just called the actual hospital that did some tests. The nurse says there's no indication of it cause they did do some sort of check for anti bodies but I didn't hear her say what tests they did. I know that when I asked the nurse at the office I just called she said that I didn't have the panel done. The nurse I just talked to said that she was going to send an urgent message to my doctor so she'd get it tomorrow and give me a call because I'm interested in Celiac testing so when I'm hearing is that official test wasn't done. No one is really being clear here and I'm too upset now to even try to get an answer out of anyone.

 

You need to understand these symptoms have been going on for MONTHS and I am sick all the time. Like I said, I can't even eat right now. I'm scared that this isn't it, because if it's not, I've already been tested for Crohn's disease quite a bit, but that can still show up in my age range (though I've been having symptoms like this for years just not as severe as they've been in the past few months) 

 

A blood test is going to be far quicker than waitinf for my GI doctor and I don't have 9 days as I just can't eat. Now I have to go another night worrying about all of this because the first hospital isn't at ALL trustworthy. 

 

Is there anything mild I can eat, even if it does have gluten, so that I won't get violently ill? I don't want to mess up a test if they do it tomorrow by avoiding gluten but I don't want to be sick any more either. I don't think they did this specific test, because she said they only ran some blood tests to check for the antibodies and those came back fine so...if those come back fine does that mean there's not chance of this? 

 

I'm just really scared here. 

[mushroom]

The celiac tests are checking for antibodies to gliadin.  But the nurse could have been referring to the ANA test (anti-nuclear antibodies) is a general screening test for a variety of autoimmune disorders (celiac is an autoimmune disease, but the ANA is not specific for celiac).

[kareng]

You haven't been eating gluten free, right?  You need to be eating a regular gluten diet for blood or biopsy.

 

Can you eat a baked potato or sweet potato?  Apple sauce or juice?  Rice cooked in chicken broth with a few slivers of carrots cooked with the rice?

[CrimsonRegret]

Yeah it was just an ANA that was run I remember her saying an ANA and they were saying no indication of Celiac from the ANA, but then I just called and insisted that someone leave an urgent message for my Endocrine doc about this and they sent her a priority email saying I want to be specifically tested for Celiac as it was just an ANA done. 

 

So I could still have it even if the ANA is fine? 

 

As for, Kareng, I plan to do that I'm going to make some rice with chicken broth cause I know chicken broth can help sooth the stomach but it's just so bad at this point. With any hope they can get the test run tomorrow. Yes I have been eating a gluten diet forever now I never switched I just thought that might be the better thing to do, if I should wait for the test then I will wait. 

[1desperateladysaved]

Wow!  Get your test results and figure it out.  It is so hard to go through confusion while you are sick.  .  You know that you can test negative and still have a gluten intolerance problem.  I hope you will get some definitive tests and Soon.

 

Diana

[CrimsonRegret]

Wow!  Get your test results and figure it out.  It is so hard to go through confusion while you are sick.  .  You know that you can test negative and still have a gluten intolerance problem.  I hope you will get some definitive tests and Soon.

 

Diana

Yeah but would just an intolerance problem drop me down from a size 8 to a size 0 in about a years length of time? I mean could I be THAT intolerent even without Celiac? I guess I'd prefer that cause then I won't have to worry as much about the cross contamination thing but...just wondering. 

[nvsmom]

Yeah but would just an intolerance problem drop me down from a size 8 to a size 0 in about a years length of time? I mean could I be THAT intolerent even without Celiac? I guess I'd prefer that cause then I won't have to worry as much about the cross contamination thing but...just wondering. 

 

It could... everyone reacts so differently to this disease. There are celiacs around here who became so thin and malnourished that they were advised to use a feeding tube and then there are others who are a hundred pounds overweight before diagnosis. As for the gluten intolerant, that can be awful and cause vomitting and extreme GI issues, where as some celiacs don't have a single physical symptom....But an gluten intolerant person, whether they have celiac or not, must follow a strict gluten-free diet after their testing is complete; unfortunately cc will always be a concern.

 

I'm not sure if anyone mentioned this, but the usual tests for celiac are:

ttg IgA and ttg IgG

EMA IgA

DGP IgA and DGP IgG

AGA IgA and AGA IgG (older tests)

total serum IgA

 

If you did not have these tests run (especially the first 3 and the last test), go to a family doctor and have him run the blood tests before you go gluten-free. You don't want to have to go back onto gluten for months if you decide to get tested in the future.

 

Nutrient levels are also tested since we are often low on some. The most commonly affected nutrients are calcium, iron/ferritin, D, B12, potassium.

 

ANA's are not usually run on celiacs. I personally had a negative ANA this past year just a few months after my positive ttg IgA and EMA tests. I think the ANA is usually used more often in diagnosing rheumatic diseases although it can be positive in other autoimmune diseases.

 

As per your original topic, as others said, if you are treating your disease (eating gluten-free) then you can expect a normal lifespan. I'm another who had celiac disease (or at least the same symptoms) for well over 30 years before I figured it out. I had a few bumps because it was untreated for so long, but I'm slowly getting better.  I'm sure you will too.

 

Hang in there... and try to continue with some gluten until your testing is done. Best wishes.

[Ollie's Mom]

Oh wow. I feel so bad for you. I wish I could call your doctors and yell at them for you.

Is there a specific reason you need a formal diagnosis? Would you be willing to live life knowing gluten makes you ill, but not have a definitive diagnosis?

I discovered at age 28 that my chronic D (tmi but my food would come out undigested about 2 hrs after I ate it), chronic migraines, bouts of uncontrollable vomiting, skin rashes, inability to gain weight, painful and horrid periods, brain fog, numbness in my hands, anxiety,.... On and on the list goes... Was cause by gluten. At the end of my rope, I did an elimination diet and found the culprit. I don't have a formal diagnosis, and don't really care because I can control my own diet. I don't need a doctor to do that for me.

Since you are so ill, and your doctors are being so ridiculous, starting a gluten free diet if this goes on much longer might be worth it. But realize this would impact your ability to get a definitive diagnosis in the future. For many of us, once gluten is out of our diets, we get so ill if we try to add it back in that we can't get tested. Because an accurate test result requires your body to be damaged enough for the blood tests / biopsies to pick it up.

Good luck, and please keep us posted.

[FidelCash-Flow]

On March 11, 2013 at 5:28 PM, CrimsonRegret said:

I just got a phone call (and it took her long enough as I called for the results last week of this test) that it says I do not have celiac....but there is a chance of a false negative right? 

 

See here's my problem. I am way too skinny....WAY too skinny. 

 

If my problem isn't Celiac because the doctor is saying the blood test says it's not (and she should have called me a week ago when she said I could call for results, which I did, then what could it be? 

 

Cause all I'm seeing is Crohn's disease now and if it's that, then I'm in trouble right? 

 

I was told by a nurse, that a false positive is actually rather common for the blood tests that's why they do a biopsy to confirm. You need to understand that if it IS this (and I did hear doctors tossing around the idea pertaining to me) then me eating gluten for the next 9 days is not an option. I am becoming violently ill with just about anything I eat. My stomach is so bad at this point I can't eat a cracker without getting insanely nauseous. I can't keep this up for 9 more days until the test. I also cannot get ahold of my GI doctor. Would it be best to just call and try to get a different doctor or talk to one on call? 

 

This guy is impossible to get ahold of I've tried every day for a week, I can't even get a receptionist. I keep getting a message that says the business hours and if I got that message to keep trying back cause that means they are busy, which I do, several times a day and nothing. 

 

I cannot keep living like this for 9 more days, I can't get ahold of my doctor, and then I get a call from a different doctor who said she ran this test that it's not Celiac. So I'm not exactly sure what to do at this point. 

 

Any advice? Because doctors suggest this, but because I'm seeing 3 different kinds of doctors right now I don't think all of them are getting all the information. 

 

Not exactly sure what to do here. I'm really really upset because if it's Crohn's I'm going to freak out. I already know someone who has that and in her early 20's she needed to get a bunch of her intestines removed. I don't need something like that. I'd much rather it be this but now it doesn't sound like it is. 

 

Any help? 

False positive or negative?  I was diagnosed with Coeliac and the more rare Dermatitis Herpetiforma.  I know that symptoms like youre describing could be a whole variety of conditions.  I have a friend who has ulcerative colitis whose symptoms are similar to what you are describing.  You could have ulcers, but keeping it real i have to say youre also describing opiate withdrawl.  So if youve been on pain killers prescibed or not that could be it also.  Best of luck

[GFinDC]

Hi Fidel,

The original poster hasn't been on the site for several years, so you may not get a response from them.

But welcome to the forum!